What to do when people say 'I have Crohn's too!'

By Jenna Farmer

3 min read

When you feel alone with your illness, there's often nothing better than speaking to someone who gets it. But Crohn's still is a relatively rare disease; meaning the chances of you knowing many, or indeed any people with it is rare. So when someone does say 'oh I have that too!' we instantly feel a bond. But people being aware of the disease or having a connection to it isn't always a good thing. Let's discuss the different answers you might receive when you say you've got Crohn's disease.

What to do when people say 'I thought I had that but..'

One variation of this is when people say 'oh I thought I had that but I don't.' I'm not sure what people expect you to do in this situation (congratulate them on a clear colon?) but what I find most infuriating is when people end the sentence with 'but I had the blood test and I don't have it.'

It may well be a UK thing but many people aren't given full investigations when they first present with symptoms; leading doctors to diagnose 'IBS' after just a quick round of blood tests. Of course, we know inflammatory markers in our blood can give a clue to Crohn's disease; but similarly, it's not a diagnostic tool and many patients report being in a flare with perfect blood tests. I have lost count of the people who have told me 'I had the Crohn's blood test'-in other words, their inflammation markers came back normal- and therefore think everything is fine. I feel like a broken record when I reply there's no such thing as a 'Crohn's blood test'.

The fact is that most people are really misinformed about Crohn's and don't often want to hear it when you point out that the only way to see what's actually going on with your digestive system is to get a camera and look inside it. Sometimes I'll explain the diagnostic process; other times I'll just leave it be.

What to do when people say 'I have Crohn's too, well I used to...'

Oh, it was going so well until we hit the second part of that sentence. When people refer to Crohn's in the past tense it can make our blood boil because we all know that this disease is sticking with us well into the future. I had a variation of this in the strangest of places last month. My son was being baptized and as I was chatting to the vicar and I told him about my Crohn's disease, he declared 'me too!' What were the chances of thought? He went on to explain 'yes, I had it but I just stopped all the medication they offered me and just avoid chocolate!'

I've no idea if perhaps he misheard his diagnosis or was just generally uninformed about his illness and needs a doctor's appointment asap-but how do you correct a man of the cloth? So I just nodded along.

What to do when people say 'Oh, I know xxx who has that...'

In life, we often try to show a connection to things when making conversation. I'm really not sure why people tell me their third cousin has Crohn's disease; it's almost as if they expect everyone who has it to know each other and hang out in a secret club (with LOTS of toilets).

What do when people say 'Oh I have that...'

And finally, when people say 'I have that' without any catches; it's really hard not to say 'Oh do you want to be my friend!' immediately! Imagine a friend who doesn't mind if you cancel plans and you can say 'I need the toilet now' to without any strange looks. On the one hand, it's really great having someone who has the same condition as you as a friend but it comes with drawbacks too. Because even if you don't want to it can boil down to competition and comparison. I find this is rife in the chronic illness community. If I'm talking about work, someone may reply 'oh you must have a mild case as you can work!' If I talk about what I eat, a reply might be 'oh I can't eat that!' And of course, if you're dealing with stomach pain/a high inflammatory marker score/frequent toilet trips, you just know somebody else has experienced double that and not batted an eyelid.

So what's the solution? I guess I *could* just stop mentioning I have Crohn's. I'm not sure why but it just always seems to slip out in conversation, even if I'm feeling well. It would avoid all these conundrums but it really is easier said than done!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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thedancingcrohnie Moderator & Contributor
I find it frustrating when someone says "oh my sister has Crohn's and she's on Humira and doing excellent. She can eat whatever she wants and functions normally." Then they look at my history and think I'm doing something wrong since I have been a much more "complicated" case. It's a sort of shame that they try to put over you. Like you are doing something wrong since others can so easily get their Crohn's under control. I typically just brush it off and say something like "i just have a complicated case, but I'm remaining hopeful." Elizabeth (team member)
Julie Marie Palumbo Moderator & Contributor
Please do not stop mentioning that you have Crohn's! You are doing the right thing in being honest, and may even help someone else who is (honestly) experiencing the same thing. I appreciate your humor in the article, as well as pointing out the obvious challenges that come with opening up to others about our disease. The classic, "Oh I thought I had it but I don't" comment is really tricky to have a response to! (Congratulate them on their clean colon--ha!). I typically reply with, "Well you're lucky!" and just move on. However, it is nice to finally find someone who has Crohn's/UC and naturally form a friendship. I have made many friends through my local Crohn's & Colitis Foundation who are amazing and understanding, so perhaps I got lucky in that case 😀 --Julie (Team Member)
Sahara Fleetwood-Beresford Moderator & Contributor
"How do you correct a men of the cloth?" got me! Haha! I hear you! I am often annoyed by comments like this, but I don't always have the time or patience to eduate someone, as much as I'd like them to be educated! I wish there was one fantastic IBD resource I could just send patients to, and know that they can get all the knowledge they need from it. Not that they would necessarily go to it, but I could at least feel like I'd done my bit when time is short! - Sahara (team member)
Amanda Osowski Moderator & Contributor
Oh man, this resonated with me. I think misinformation and good intentions are behind some of the comments, but not enough of them! Thank you for sharing some ideas on how to respond 😀 Warmly, Amanda (team member)
Matt Nagin Moderator
I use situations like these as an opportunity to educate people. There is indeed a lot of misinformation about Crohn’s out there and although it can be annoying to explain and correct people, it is always good to spread awareness and educate people.
ShoshannahK Member
In my entire 13 plus years with Crohn’s I have only met one person who actually admitted to me that they also have Crohn’s. Of course I have met people at the infusion site where I get my Entyvio . I have also been to a Crohn’s and Colitis Foundation seminar before the pandemic. I was a little uncomfortable there because I had driven 45 minutes to get there, and there were no seats left. It was strange also because they told us there would be a breakfast for us, and they actually had potato chips and soda and coffee. That is not exactly healthy for a Crohn’s patient. They had bagels also, but I am gluten free. I felt that the patients were not valued there. When I inquired as to why they have monthly meeting in hospitals, they had no answers. I am not sure that the immunosuppressed patient should be socializing in a hospital. A couple of times I even told people that I had Crohn’s only to hear “I’m sorry.” Then later on someone else tells me that the exact person who said “I’m sorry” actually is a Crohn’s patient. I have met a few of people who have family members with Crohn’s. It seems that people around here are fearful of others finding out. I continue to tell people about Crohn’s in order to spread awareness. I see commercials on TV all the time for Crohn’s medications. Unfortunately, there is no real support for us. I am not willing to go to a hospital to socialize. I go to an infusion site where patients are discouraged from communicating with each other. Even at a Crohn’s and Colitis Foundation educational seminar, the patients are the second class citizens there. It is mostly about educating doctors, etc. I kid you not, but at these seminars, they have pharmaceutical representatives who pay for these continental breakfasts that consist of unhealthy junk food that we are not supposed to eat. I have seen the same, exact pharmaceutical representatives at the infusion site where I get Entyvio. I have seen these representatives bring the entire medical staff catered lunches. I have seen them eating these lunches right in front of me. I have overheard the reps talking to them about their companies. One time at the infusion site, I overheard a nurse say this to the other nurse, “There is an Entyvio dinner tonight at that expensive French restaurant in Falls Church. We should all go.” They get treated to dinners at exclusive French restaurants and delicious catered lunches several times per week, and I had to drink Coke and eat potato chips at a Crohn’s seminar. It’s as if society doesn’t really care about Crohn’s patients all around. So the Crohn’s patients keep this a secret from each other. There are no groups to meet in person that are not in hospital settings. There are large medical practices that treat Crohn’s patients, but they do not open doors on The weekends for a support group. They could if they wanted. There is no interest. I doubt the pharmaceutical companies would bother to cater for a support group, unless it were the usual junk food. They save the French restaurants and catered meals for the healthy people. I know I sound discouraged, but unless I see changes, I will remain discouraged about a support group for Crohn’s patients. Meeting people who I later find out have Crohn’s and did not tell me when I told them is discouraging. Watching pharmaceutical reps treat nurses and doctors with the utmost respect and then treating the patients like second-class citizens is discouraging. If only I had enough money to start my own organization and donate…. 
1. thedancingcrohnie Moderator & Contributor
 <inline-mention username="ShoshannahK" user-id="4727974"/> I hear you loud and clear! I've had these similar experiences and I conquer that it is definitely discouraging. I often want to get involved in these large organizations regardless in order to shine some sort of light. But it is hard to see the way things are for sure. I appreciate you being transparent and sharing your thoughts with us. We understand completely. Hugs, Elizabeth (team member)

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